published 3/4/20 About Coronavirus (Covid-19) and Lyme Many people with and without Lyme are fearful of Coronavirus also called Covid-19. In my Seattle Lyme practice, I am answering questions about what one should do to protect themselves and to boost their immune systems. Many wonder if immune dysregulation, caused by Lyme, increases their chances of acquiring the virus, having a […]
Update February 27, 2020 Warm weather is right around the corner, I know some of us are experiencing freezing weather but Spring is around the corner. The south will start to feel great outdoor weather in a matter of weeks. Lyme has left made my life hell, I don’t want you or anyone you love to go thru the same […]
News LymeDisease.org 21FEB2020 Researchers have determined that seven herbal medicines are highly active in test tubes against B. burgdorferi, the bacteriathat causes Lyme disease, compared to the control antibiotics, doxycycline and cefuroxime. Published in the journalFrontiers in Medicine, the laboratory study was funded by the Bay Area Lyme Foundation and supported in part by The Steven & Alexandra Cohen Foundation. Researchers at Johns Hopkins […]
I found this app today and it sounds like a great resource, or the best resource we have to date. Please check it out. Melinda By: Bieneke Bron, Maria del Pilar Fernandez, Pallavi Kache, University of Wisconsin – Madison & Columbia University04 June 2019 According to the Centers for Disease Control and Prevention, the number of people getting diseases transmitted by ticks, mosquitoes and fleas has tripled in recent years. Milder winters and warmer springs and falls are making matters worse by expanding the ticks’ range to new areas. Ticks are small but mighty adversaries. They represent a real threat to humans since they carry several infectious diseases, including the bacteria that causes typhus and Lyme disease (or Lyme borreliosis), which can be chronic and debilitating. These tick-borne diseases should be a serious concern if you live in a high-risk area, work with animals or spend a lot of time in nature, so you need to plan accordingly. If you might encounter ticks for any reason, then you should download “The Tick App” as your expert on the go. Since ticks are often found in rural or less populated areas, you may have trouble looking up information on the internet due to limited connectivity. With the app, you’ll have information readily available to understand tick prevention options, potential areas where you may encounter ticks, and most importantly, ways to remove ticks after exposure. Users in the Northeast and Midwest can use the […]
Dear Subscriber, Most people with Lyme disease should take probiotics while they are in treatment. However, not all probiotics are created equal. And there are different types of probiotics for different situations. In Probiotics in Lyme Treatment I explain the different kinds of probiotics. Preventing yeast requires a different probiotic strategy than treating active yeast infection. Some on antibiotics may also develop an intestinal infection problem called C. Difficile. In Probiotics in Lyme Treatment I show you which probiotic products to use for each of these situations and describe how to dose them. In Health, Marty Ross MD Read Now Spread the Word! ShareTweetForward Quality Matters. See the various probiotic products I use successfully in my practice at Marty Ross MD Healing Arts. Look Now
Dear Subscriber, There are a number of things that can block your recovery from Lyme disease. If you have been on antibiotics for six to nine months and you are not getting better, there are additional steps to take. In Treatment Stuck? Try These Steps at Six Months and Beyond I describe how to move your treatment forward. In my Seattle practice, I discovered ways to move the treatments forward of my patients. In Treatment Stuck? Try These Steps at Six Months and Beyond I describe my formula. Read and watch this article to see if effective treatments are right for you. In Health, Marty Ross MD Read or Watch NowSpread the Word! ShareTweetForwardQuality Matters. You can find the various supplements I use effectively in my Seattle practice at Marty Ross MD Supplements. Look Now
This is a repost from 2014 discussing a Gluten-Free diet. The information is an overview and may help if you’ve been told to start your Gluten-Free journey. I hope this answers some of your questions and starts you on your way to less inflammation in your life. Have a great day and always thank you for reading, I appreciate you. I love reading your comments so keep them coming. Melinda This week I want to give a brief overview on Gluten Free Diet and Epstein Barr Virus. Both where the top searches in last weeks post. I hope the information is helpful. The CDC is a great place to get up to date information. Have a great weekend. 🙂 M Gluten Free What does it mean? My doctor follows The Mayo Clinic, Gluten-free diet: What’s allowed, what’s not. All information taken from The Mayo Clinic outline. A gluten-free diet is a diet that excludes the protein gluten. Gluten is found in grains such as wheat, barley, rye and triticale (a cross between wheat and rye). Gluten causes inflammation in the small intestines. Switching to a gluten-free diet is a big change at first, it takes some getting used to. Many specialty grocery stores sell gluten-free foods. We shop at Whole Foods and have found a large selection of gluten-free products, including brownies. Here are some surprises I discovered. My husband eats many gluten-free products but not exclusively. The Mayo Clinic strongly warns […]
How many participants in the MyLymeData patient registry ever had a Lyme-related rash? (34%) How many initially presented with flu-like symptoms? (64%) How many were misdiagnosed with a psychiatric illness? (54%) These are some of the details you can learn in the MyLymeData 2019 Chart Book. This report is a compilation of our research results based on more than 2.5 […]
We are almost to our goal!Thank you so much to this amazing community for your support! We have raised over 80% of the funds to access this amazing database that will help us fund the future of Lyme disease! We are only $760 short!For the past 3 years, Lyme Warrior has been working to fund research & patient care through […]
I don’t endorse Marty, actually I think he mostly peddles his supplements but he does provide some good information. M Dear Subscriber, Unfortunately, Lyme disease relapses occur. When they do there are specific steps you should take to figure out what needs to be treated and how to treat the problem. In How to Handle Lyme Disease Relapse included on my newYouTube Channel, I describe the steps to take to handle this problem. Did you know relapses can be prevented? After you get a relapse under control, there are steps to take to prevent future relapses. In How to Handle Lyme Disease Relapse, I also describe these steps so you can maintain your health. In Health, Marty Ross MD Watch NowSpread the Word! ShareTweetForwardQuality Matters. See which products I found useful in my Seattle Lyme practice to prevent relapse.Look Now
Good Day, The August series of my Lyme Q&A Webinar begins this Thursday. I have three webinars planned on Thursdays. Did you sign up? Join my Lyme Q&A Webinar, Conversations with Marty Ross MD, to get answers. If you read this before Thursday 6 PM CST, it is not too late. Each week is NEW. No two Lyme Q&A Webinars are the same because you create each one with your questions. What do you want to know about Lyme? I have an answer for that! Find ways to improve your Lyme disease treatment. I am ready to help your recovery. Join me for the next Conversations with Marty Ross MD. Sign up now to reserve your space for this Thursday. Ask your Lyme disease questions in my live webinar called Conversations with Marty Ross MD. In this webinar you willlearn fresh ideas to take back your health and life. No two webinars are alike because they are designed by your questions. Join me in my mission to improve lives. Please forward this email to anyone you know who has Lyme disease who will benefit from one of my Lyme Q&A Webinars. So what are you waiting for? Sign up now to reserve your space for Thursday at 6 PM CST. I look forward to helping you. In Health, Marty Ross MD, LLMD Sign Up!
Washington, DC – WEBWIRE – Monday, July 22, 2019 Surveillance case definitions are not intended to be used by healthcare providers for making a clinical diagnosis or determining how to meet an individual patient’s health needs – CDC The Centers for Disease Control and Prevention (CDC) has agreed to add a disclaimer to the surveillance case definition for Lyme […]
Repost from 2014 So much time has passed since this first Lyme blog, I found it interesting and naive. I hope you enjoy reading. Maybe you’re at the beginning of your Lyme journey. I’m always here for you. M Scheduling probiotics, medicine, and supplements is a challenge. With probiotics you have to wait before eating or taking meds, then juggle of […]
A medida que las temperaturas se calientan, las posibilidades de encontrar garrapatas aumentan. Hace poco una PA dijo que no tenemos a Lyme en Texas, ¿qué? Sí, las enfermedades aburridas de Lyme o garrapatas están en todos los estados. Algunos estados tienen un mayor porcentaje de casos, pero no se engañe, las enfermedades transmitidas por garrapatas se encuentran en todos […]
As the temperatures warm the chances of encountering ticks increase. I had a PA recently say we don’t have Lyme is Texas, what? Yes, Lyme or tick boring illnesses are in every state. Some states have a higher percentage of cases but dot fool yourself, tick-borne illnesses are in every state in the United States. There are now 30 strains of […]
U.S. Pain Foundation is a 501(c)(3) organization dedicated to improving the lives of people with chronic conditions that cause pain. HERE ARE SOME OF THE PROGRAMS WE OFFER: Awareness & Advocacy Programs INvisible Project Advocacy Program Pain Awareness Month Points For Pain Medical Cannabis Program Support & Empowerment Programs Pain Connection Pain Ambassador Network Pediatric Pain Warriors Share Your Story Education Programs Take Control of Your Pain Learn About Your Pain Pain Medicine 411 Pain Education Portal (PEP) Talks Clinical Programs National Coalition of Chronic Pain Providers and Professionals To learn more, visit: uspainfoundation.org Melinda Sandor Ambassador-Texas U.S. Pain Foundation
I had to accept the loss of everyday control once diagnosed with Fibromyalgia. I go to bed with plans for the next day, when the morning rolls around, I can’t get out of bed. In the past, I would beat myself up, feel shame and anger. A shower takes an hour, it’s painful and exhausting. Instead, I use hospital approved cleansing wipes […]
Second Stage Dementia As dementia progresses, the symptoms first experienced in the early stages of the dementia generally worsen. The rate of decline is different for each person. A person with moderate dementia scores between 6–17 on the MMSE. For example, people with Alzheimer’s dementia in the moderate stages lose almost all new information very quickly. People with dementia […]
Every case of Lyme is different partly do to which major organ the spirochetes penetrate and set up house. They go for the brain, liver, kidney’s or heart, some of the symptoms are relative to the organ they set up house in. Then you have co-infections to deal with. A tick can give you Lyme and other diseases it carries […]
Lyme is one of many Autoimmune Diseases that share the same or similar symptoms. It’s one reason doctor’s tend to treat each symptom until they realize it’s one illness and give a referral or you’ve given up on them. My journey started with pain in the middle of my chest, Costochondritis, my General Practitioner said, it will heal in […]
By Susan Scutti, CNN 17 hours ago The Asian longhorned tick most likely began invading the United States years ago. Now found in nine states, the tick may soon occupy a large swath of eastern North America as well as coastal regions of the Pacific Northwest, according to research published Thursday in the Journal of Medical Entomology. “This tick can […]
ILADS has taken the bold step from staying under the radar to leading the way to better LYME treatment. Today many “expert” Lyme doctors are training Medical doctors to recognize Lyme, basic treatment with written treatment guidelines. You can download the Treatment Guidelines yourself, I look forward to reading. In theory it sounds good for Lyme suffers looking for a diagnosis. […]
The Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes (or Ad Hoc Committee) is an international, all voluntary, professional committee formed to improve the ICD codes for Lyme and Relapsing Fever borreliosis and address the human rights violations generated by inadequate codes. In 2017, members of the Ad Hoc Committee met with Dainius Pūras, the United Nations (UN) […]
If your doctor does not listen to your physical complaints change doctors ASAP. This holds true for anyone. Lyme is real, Chronic Lyme does exist and there is no cure. Some will argue using supplements will cure Lyme. Do your homework if this sounds like the healthy treatment. Many Lyme patients take supplements, conventional and non-conventional medicine. I took more […]
But Here’s What You Should Really Worry About The New York Times reported yesterday that a new-to-the-United-States tick species has been identified in seven states in recent months, after an infestation was first discovered last summer in New Jersey. The tick is native to Asia, where it is known to carry a dangerous virus that kills 15% of the people […]
Original post 5/23/2018 Reposted for The Fibromyalgia Directory. It’s summertime, ticks and insects carrying tick born illnesses are worse than last year. Practice all precautions if out in tall grass, tall scrubs or trees. I’m dealing with in Dementia, Fibromyalgia, Neuropathy, Lyme Arthritis, Cognitive issues, PAIN, falling, PAIN and pain medicines. There are days you want to cry, scream, on […]
You may have noticed the name change from Lyme Update to Lyme Progress. The reason for the change, it’s time to start looking forward, short-term and long-term. I still struggle with illnesses which Lyme left and have days can’t get out of bed. WINNING is looking forward. The chronically ill understand this mindset. After dismissing my Lyme Doctor in Washington, I came back to Texas determined to build a team of doctors who could manage the different aspects of my illness. The next post I will talk about the long list of doctors required, today I wanted to discuss my immediate complaint. PAIN, PAIN, PAIN! I made my General Practitioner the main doctor, he was my GP prior to Lyme but many years had passed. We didn’t know each other any longer and trust had to be earned on both sides. We have scheduled 30-minute appointments instead of normal 15 minutes, we have more time to talk. Talking is a big part of getting to know each other. I’ve had several appointments with him and last week we talked about PAIN. Being a bit detailed, I put the list below together to show the different types of pain. Pain is pain is pain is not the same pain. There are many types of pain and over time they can feel like one but are not. The information provided helped him see there were many areas of my health not being […]
I fired my Lyme Literate Doctor The last straw! My Lyme PA prescribed a medication which interacted with a psych medication. Making me Psychotic, pure bat crazy. Scared of myself. Walking in circles non-stop until exhausted. It took days for the medication to clear my system and bring me back to earth. It was life changing. I said horrible things […]
There are times when Chronic Illness can get the better of you. I had such a week resulting in shaving my hair off. I’m no GI Jane but do have a nice head minus the scars from brain surgery. For the past 13 years I’ve been a caregiver to my grandparents, spent time in Psychic Hospital twice for ECT. Finding […]
Amazon donates to International Lyme and Associated Diseases Educational Foundation when you shop at AmazonSmile. Please bookmark the link http://smile.amazon.com/ch/51-0604603 so all your eligible shopping will benefit ILADEF. If you have any questions, please sign in to http://org.amazon.com and click on the Help tab to see our FAQ topics. Thank you for your participation in the AmazonSmile program! Thank You Melinda
Am I healing from Chronic Lyme Diseases? Who knows? Lyme doesn’t have a cure, only times of remission. There’s no way to plan for lingering health problems you will get, will or won’t recover from. Symptoms may go away over time, stay same or get worse. There’s no definitive test to gauge how your major organs are affected unless the damage is severe. The symptoms I struggle with daily are pain, pain pain, lack of balance, some memory has returned looking like a Tommy Gun practice. There are days when I can remember for a few minutes instead of seconds. If you’ve read my post the past two years, you’ve seen the cognitive issues. I can’t recall the proper name of items, have no concept of time and don’t fully recognize inflection. After two years in bed, I started to relearn walking in mid March. Falling is a physical daily threat. As my body gets physically stronger there are years of doctor and dentist appointments to catch up on. Before Lyme I started to develop Agoraphobia which has manifested to extreme levels anxiety leaving the house. Every doctors appointment is a challenge. The Lyme doctor prescribed a drug in the same class as one I take for my mental illness. I became Psychotic, waiting a week to touch down in reality. While Psychotic I wanted to hurt people, I was ANGRY. The person I became was not me, yelling, screaming, […]
To C who’s in Reserves Chromic Lyme caused many falls, some serious, some not. I took two good slams to my right knee in 18 months. It didn’t prepare me for needing a knee replacement. They pain level from Lyme was so high, the knee became part of the over all pain. I received the long needle steroid shot yesterday along with the news. I’m staying positive by saying better now than later yet know there are other surgeries in the future. Recovering from surgeries caused from misadventures with Lyme and resisting a cane. I am only 53 and feel much younger than my body. Now he says it’s essential to get a walker to help me with balance. I went from sick to no memory to old and decrypted. I had to get jacked up, feel younger than my body. Music takes me anywhere, doing anything, just close my eyes. Hope you enjoy the selection. x M
Port Removed long after recommended time. At last Psychiatrist appointment he questioned why the port had not been removed. He is also a Medical Doctor and proceeded to tell me all the flesh-eating, horrible infections a port can cause. I said not going to D.C. in several month for surgery. We received a referral from General Doctor, had surgery the […]
I am walking after three years spent in bed, how could anything be worse than Lyme Disease. I’ve lost three years of my life screaming in pain, narcotics, nine months of twice a day IV Infusion Treatments. The conflict in my marriage is understandable but not erased. I can not stress enough how important Tick Borne illnesses are, they can kill. If you already have a compromised immune system, your starting behind the curve. I’ve talked to many at WordPress with Chronic Lyme, many of them spent 10-15 years before diagnosis. Think of the pain and isolation of our fellow Bloggers. People have said we don’t have ticks, for one Lyme and Powassan Disease is transmitted by many sources other than ticks, mosquitos, sand flies, are just a few culprits. Thick of it this way, in the wild animals of all types of animals die, many pest visit the buffet. Now imagine how many pest fly to a hump of dung! Many more than we know and the world is bigger than or neighborhood. The flying pest target is blood, they have to eat. They don’t discriminate on were to go for lunch. The ticks who carry Tick Borne illnesses are smaller than a pencil lead, try to find that while doing a tick check, you will not see them. Before Chronic Lyme I refused to use DEET, now I won’t step out of my house without. At least 20% […]
The days get lonely, when your symptoms reach the disability stage. Times can get lonely, ask friend or create a circle of like-minded friends who you can talk honestly with. Keep Learning. If you’re concerned about addiction, talk to Doctor as you decide the treatment best for you.One complete withdraw on Xanax and two days without Temazepam. This is a monthly struggle. The CDC is putting a tighter grip on Control Substance management is critical if you suffer from lack of memory. Going thru withdraw in August and not clear how, I had to understand how this happened. I get anxiety when an addictive drug is running low. I’m addicted to are Xanax, Dexedrine, Tramadol, and Morphine Patches. The Xanax and Dexedrine are for mental illness the others are for Lyme Protocol. The ongoing frustration is with myself, CVS and my husband. It is difficult to take care of a Chronically Ill person. My husband has to work, do every task at home, grocery shopping, everything. That’s a big understatement. I have severe dysfunction in memory & cognitive ability. CVS had new script for increased dosage of four a day, first refill my Doctor called increased to 3 daily, a week later he increased the dosage to 4X. If CVS would have filled each new increased dosage I could skipped the experience of 100% withdraw. Part of my Lyme Protocol is Temazepam, a restless leg medicine. If you can’t sleep you’re […]
I included the photo to show I’m very organized and life is getting ready for change. *The chatter are my thoughts, a Lyme Literate Doctor can consult and talk about options.* Xx M Living with Chronic Lyme Disease, requires tremendous faith, inner and physical strength. Please search to discover you’re core strength: it strength may save your life. Have you […]
Bridalveil Falls Bridalveil Fall (620 feet) Flows: all year, with peak flow in May. This is often the first waterfall visitors see when entering Yosemite Valley. In spring, it thunders; during the rest of the year, look for its characteristic light, swaying flow. You can see Bridalveil Fall from near the tunnels on the Wawona Road (Highway 41) or Big Oak Flat Road (Highway 120) and from a signed parking lot on your way into Yosemite Valley. You can walk to the base via a short but steep (up to 24% slope) trail in just a few minutes. https://www.nps.gov/yose/index.htm 🙂 M
@SeeYouClearly Forging through another day! Life is good! 👍 pic.twitter.com/Kab7zdpYLV — Nobody's Hero (@BoldAsLove65) October 12, 2016
The International Lyme Disease Association (ILADS) http://ilads.org, knows Chronic Lyme Disease exists, requiring extensive treatment currently restricted by the Center of Disease Control. The letter is a proactive communication advocating for longer treatment options. Taken From ILADS letter to Centers for Medicare & Medicaid Services Department of Health and Human Services. RE: Proposed Rule concerning antibiotic stewardship in Hospitals, Critical Access Hospitals and Nursing Homes Additionally, the proposed rule emphasizes measures to eliminate discrimination directed at certain groups. The ILADS comment pointed out that persons with Lyme disease and tick-borne infections constitute a large and growing class of individuals subjected to severe and unjust discrimination which requires recognition and correction. Specifically, although many individuals in this group of patients often require longer courses of antimicrobials than are commonly prescribed, many are denied appropriate care based on arbitrary protocols that do not consider the specifics of their case. While ILADS recognizes that there are differences of opinion in the literature, after a thorough review of the evidence regarding Borrelia burgdorferi, the agent of Lyme disease, ILADS concluded that here is substantial scientific support for persistent infection. For this reason, ILADS promotes the selective and judicious use of extended antimicrobial therapy in patients with Lyme disease rather than the arbitrarily proscribed treatment durations championed by others. http://www.ilads.org/ilads_news/2016/ilads-statement-on-cms-proposed-rule-concerning-antibiotic-stewardship/ To read the entire response, click on link above. You will see the organizations fundamental beliefs, commitment to improving treatment for Lyme and other tick […]
I HAVE BIPOLAR DISORDER MY MENTAL HEALTH IS TIED TOGETHER WITH MULTIPLE MEDICATIONS, THREE OF WHICH I’M ADDICTED TO. MY STRUGGLE WITH BIPOLAR DISORDER IS BALANCED OUT ON A FOUNDATION BUILT ON XANAX. I AM ADDICTED TO THREE OF THE DRUGS WITH XANAX BEING THE NASTIEST TO WITHDRAW FROM. LYME DIEASE HAS TAKEN MY MEMORY AND I TOOK TO MANY XANAX BEFORE THE NEXT REFILL. IT’S A CONTROLLED SUBSTANCE IN TEXAS WHICH MEANS ONLY YOUR DOCTOR CAN APPROVE EVEN ONE PILL BEFORE REFILL. MY DOCTOR WAS ON VACATION AND I WAS BATTLING THE BEAST WITHIN. I’m on the mend, just not well enough to write a post about my journey. Thanks to everyone who has reached out to me. I was able to battle things out at home, there was a point when the questions came up, was it time to go to hospital. Below are a few comments I’ve made while piecing myself back together. They are not entertaining, quite disgusting actually but IT’S REAL. I have Treatment Resistant Bipolar Disorder with Xanax as the anchor drug. I’ve lived thru what doctors or instructions may mention about withdraw. IF you were not aware of what Xanax withdraw looks like, FIRST look in the mirror. It’s the patients responsibility to participate with treatment. One critical way is being aware of every angle, good, bad, nasty, uncomfortable, make you beat yourself against the wall, wailing in pain……..I feel like my worst sins have beaten me with […]
Let’s Talk Lyme Last update, we talked about IV Therapy as a treatment option for Chronic Lyme Disease. IV Therapy is one type of medicine to help you heal. I also take a close to 20 prescriptions and who knows how many supplements. Insurance doesn’t pay for the IV Therapy which is quite common. To ask a question thru the […]
I started at 8:30pm deciding on video’s. After years of enjoyment, YouTube and VeVo are enforcing copyright laws. Somebody has an answer, please leave a comment or email msandorm@verizon.net. The Shania Twain video is an example, of the the copyright screen. I stopped at 1:00am, way past bedtime. I’m praying for progress today. Here’s a snack while I work on desert. Xx M
The post is my opinion based on my own experience and talking to people with Lyme Disease. The symptoms of Lyme Disease are the same as many chronic illnesses. The parasites move quickly, if not caught early, the more difficult to treat. Lyme is a serious illness, it moves to major organs which bring on worst symptoms. I have Chronic Lyme and two co-infections. The parasites have moved to my brain, causing cognition, balance, eyesight and pain is severe. Most days I’m in bed due to pain and trying to reducing inflammation. I’ve included an interview with Lorraine Johnson, CEO of lymedisease.org. She discusses Lyme, CDC and how Lyme Diseases is a serious illness. The time to take precautions is now. Xx M
Dr Jemsek is an Infectious Disease Doctor who played a pivotal role identifying AIDS in N. Carolina.You will hear him mention in the video. He is my hero and my Doctor. There are several treatment methods, each Doctor is different. I’m on antibiotic IV Therapy 5 days a week, Lactose Ringer when not on IV Therapy, close to 30 supplements, Morphine Patch, two horrible liquid Rx’s and close to 35-40 prescriptions. YouTube is an awesome source for Lyme information. Xx M
Money can create stress in the strongest marriages. With Chronic Lyme the topic of money was an issue in our house. How does $39,000 for 7-9 months of treatment impact retirement plans? I considered not spending the money. That was a heated issue, I saw our retirement go down the drain, it wasn’t a good feeling. The timeframe to wellness […]
Thank you for all the hugs and prayers, my heart overflows with sunshine. There is no question I will survive, a cure will come sooner than later. Xx M
I hope to have a Lyme Update post with information on the cost of treatment. Thank you for stopping by today. I am happy to answer any questions. Xx M
My previous content has not transferred yet. I’m moving forward with new post lookingforthelightblog.wp.com. Thank you for following me, I appreciate your comments and friendship. We can all help others. I’m here for you, just leave a note. Have A Blessed Day. XO Melinda
I had surgery for a Port, it is required for IV Treatment. I choose IV Therapy because it has a record of healing faster. I can tell already a Port for 9-12 months is no merry-go-round. The surgical area’s not bad. I fell breaking my arm or it was run over by a monster truck before the trip. The procedure is short, it takes longer to prep than do surgery. A catheter goes into small section of heart, then is brought thru skin to take medicine thru tubing hanging down with blue top. Doctors do the procedure differently.The bandaging stays the entire time and is changed once a week. This is my basic regimen for those who don’t understand the horrible effects of Lyme IV Therapy. In a future post, I’ll talk about cost of treatment. If you would like to know more leave me a comment, or read all 13 of my Lyme post. All ticks can carry Lyme, ticks the size of sesame seed to seed of rice. P.S. mosquitoes and flies can also carry Lyme. The best revenge is sunscreen with 20% DEET. If out hiking in pants tuck into socks. Wear light-colored clothes and search like crazy once home, think of a tick that small in your hair. Basic Regime Five Supplements (everyday) Seven RX pills (everyday) 10mg Morphine patch (one a week) M,W& F Antibiotic Drip 2 times day with 2 shots Heparin All other […]
Several months ago my vision changed drastically. I could barely read, saw things not there, my floaters looked like worms. My Lyme doctor looked and saw the worms and one of my Iris’s changed colors. Go see eye doctor she advised. It was time for new glasses and annual test. I left the eye exam shocked! I had lost vision in each eyes which did not look like glaucoma. The worms were there, one close to retina. He explained the test showing the print out at what it looked like. “I’ve never seen anything like this” Not what I expected to hear. Saying it looked like my optic nerve. He could not right a RX for glasses, I didn’t understand. He refered me to a Nuero-Opthomologist. Over two appointments I had 10+ test. The last test hurt, I had wires in my eyes for 30 minutes. A current went thru one tucked in under my eyelids. I don’t care for lidocaine in my eyes. I always try to get information from techs. This time tried different approach, asking what each machine tested for and what would the results tell the doctor. I asked about the test with wires, would results identify glaucoma, the machine wasn’t used for Glaucoma. He sends test to expert for their perspective, means no answers until appointment on 10/20/15. Eye problems are mentioned in the Lyme Books I’ve read. I didn’t connect Lyme with eye problems. […]
We were in DC last week for appointment with Lyme doctor. The Pope being in town caused roadblocks and much excitement. Perfect weather, I could tell from the hotel window. The appointment was originally scheduled as phone update. I’m so frustrated, the doctor needed to see and hear. I contemplated not having treatment. If I could die from treatment, they […]
Most countries are seeing warmer Fall and Winters, which allow ticks to live. Keep in mind enjoying hiking this Fall. Lyme Specialist recommend a spray with 20% DEET. Please read the article written in New York Magazine by a doctor who contracted Lyme Disease. He shares the difficult journey for diagnosis. It is heart breaking. Due to delay in […]
I’ve been sick for years without a correct diagnoses. I took a wild guess and found a Lyme doctor. A reckless one. He gave me a lab report saying I had three times the level of lead than normal. We spent three days looking for LEAD. I called the office, while on hold I realized this wasn’t my labs. Chronic Lyme Disease is a long battle. I wanted the best Doctor possible, off to D.C. for my first visit with Dr. Jemsek. I learned the Lyme Disease has progressed. My cognitive ability is 50-60%, I have Adrenal Fatigue, it can take five years of treatment to get well, or well as I’ll get. The tests were positive and will allow for IV Infusion Treatment. The next step is how much insurance will cover. Without insurance coverage the cost of IV Infusion Treatment for six months is $40-60K. I also have to fly to D.C. every month for checkup. FUN! FUN! I sincerely thank my friends, you’ve lifted my spirit with every comment of well wishes. I’ve included videos showing people who have Chronic Lyme. One video is my doctor, Dr. Jemsek. The crowd is mainly patients he’s treated over the years. Celebrating the premier of his movie Under Our Skin. XO Melinda Jemsek speaks out Avril Lavigne **Everyone who spends time outside or has children playing near wooded areas. The video is an hour-long homemade video made by her husband. […]
I hope everyone has a great day. Everyone can celebrate the blessing of today. It’s fun posting photo prints, you can see my interest outside of WP. You can see another side of me. Let’s Celebrate the day together. XO M
Four months ago I wrote the last Lyme Journal Entry. I thought my strength would allow me to blog thru the illness. Then the 5-6 month point turned my life upside down and it’s been hell. I fired Lyme doctor and not taking meds at this time. I know many are wondering why the hair photo? I was losing hair […]
I had a small Bucket List in my head for years, more detailed one on my computer, this week I jumped head first in the deep end. I even added a tab on blog for others to see. Please share, I love hearing your goals. We can support each other thru the storm. The Lyme Disease has taken a toll […]
Taking my mind to where it wants to go. XO Warrior
I want to thank heatherfightslyme.wordpress.com for posting this video. She suffers from Chronic Lyme, check out the wealth of knowledge on her site. While fighting our own battle we can forget children and teens suffer from Lyme Disease. This beautifully sad video shows the struggle to find answers from a teenagers eyes. I feel her pain, want to hug her and make everything okay. We know it’s not that easy, hugs and understanding is always appreciated. XO Warrior Challenges this week: Exhausted, waking up exhausted. Not waking up by 9:30AM throws the days pills off schedule, especially the days I take shots. I start the day with multiple probiotics which need at least thirty minutes before starting the meds or eating. It feels like the anti malaria and high-powered antibiotics are eating my stomach. The gastro pain along with existing gastro issues make for an unpleasant experience. I wasn’t eating enough at breakfast. I tried eating a 1 1/2 cups of cereal and my esophagus ulcer was smiling. Slept most of four days and didn’t take any of my medication. I feel better but know my body requires help to fight this virus. The backlash of not taking my everyday medications has repercussions. I’m addicted to stimulate drugs taken for Bipolar Depression. Not taking them properly caused a huge roller coaster ride. If I take the drugs to late in the day, I’m up until 3:00AM, which keeps the cycle going. […]
This is a 6 minute video from the 2014 Gala which raises money for Lyme Disease research. Patients talk in the video about the symptoms and difficulty getting a proper diagnosis. I have tears in my eyes. Severe gastro illness after starting second Malaria RX added Fatigue, exhausted and frustrated Doubled neuropathy Rx in effort to reduce pain Full body edema, very […]
To my dearest twin, you are always there with your humor or words of encouragement. Thank you. 🙂
“You can’t be that kid standing at the top of the water slide, overthinking it. You have to go down the chute.” From BOSSYPANTS by Tina Fey I wanted to drop a short note to let people know I’m ok. I have good and bad days however it’s easy for me to remember so many have life much worse. Today […]
A chronic illness will flush out the weak emotionally and physically. Adversity brings out the true colors in people and those who love them. I’ve attacked Lyme Disease like other challenges in life, fight with a big stick and jump higher. My husband runs the household, carrying a heavy load. I’ve been sick for five years and he is still at my side. It’s not for lack of effort on my part to make him leave. Last week was the worst emotionally since being diagnosed with Lyme Disease. I had appointments with the Lyme Doctor and Cardiologist. This was the first appointment with Lyme Dr. since all test were completed. You know you’re off to a good start when the first thing out of his mouth is you are very sick and in a lot of pain. NO KIDDING. That was not surprising but what followed blew my mind. The test showed my body has 3 times the amount of Lead acceptable, high Mercury levels and high Cesium. I’d never heard of Cesium, it’s a naturally occurring element found in rocks, soil and dust at low concentrations. Lead levels at 3 times the upper expected limit say recent and ongoing exposure. Lead accumulates in the body, at some point I’ll have Chelation treatment. The side effects of Lead are extensive including organ damage. I have racked my brain on what could cause Lead damage in the house and come up […]
This past week I did everything the doctor said not to do. The backlash was frightening. One warning from doctor is not sit for longer than thirty minutes. I spent most of Saturday and Sunday in front of the screen with few walking around breaks. The edema took over most of my body. By bedtime my feet and hands were […]
I’ve been in the house so long there’s no reason to keep up with the day of week. Today is a perfect example, Throw Back Thursday is on Wednesday. I want to cry and laugh at the same time. The neurological effects of Lyme Disease sucks. In the Chronic phase the virus can set up house in the brain causing neurological damage. To remain as positive as possible I don’t focus on the effect to my brain. There is no way to know if the damage is permanent or not. One side effect is memory loss, like walking to the kitchen and not remembering why. It’s annoying and a reminder you have a virus boring thru your brain. I choose not to focus on the what or why even with constant reminders. I am not at the wheel and trust God to get me to the other side.I’m on a long journey that will give plenty chances to laugh, laugh with me, not at me. Overlook the missing words in a post, thanking you for stopping by more than once and Throw Back Thursday on Wednesday. Life is too short to worry about the little things. Let’s laugh, then focus on how we can help someone and have our collective voice heard. Sending a heart-felt thanks and Texas size hug to you. M
God blessed me with the ability to feel empathy. He also filled my heart with sunshine. Today my husband participated in the Ice Bucket Challenge. My heart shines as I watch this challenge cross the globe. If we look, there is someone suffering more than ourselves. I work hard to keep in mind on the tough days. M I’ve had a cold for a couple of days, germs rode in on husbands back. Thank you for the prayers and kind words, you lift me up. I have a positive outlook, no pity party here. Lyme Disease may kick me around but never down. A special shout out to my Twin in Germany, she keeps me rolling in laughter with vomit stories. You had to be there. This is a list of probiotics, supplements and shots taken in preparation for my antibiotic treatment. My next appointment is 9/17/14, I’m hopeful he will start the antibiotics. Supplements Magnesium Malate 1,250mg 1 daily Omega 3,2126mg 1 daily Alpha Lipoic Acid 600mg 1 daily Multi Vitamin 1 daily Acetyl L-Carnitine 500mg 1 daily Reservatrol 150mg 1 daily B12 Shot three times a week Methylocobalamine 25mg/ml injection 1cc 3 x week Probiotics 2 pills in AM One liquid probiotic packet daily In an effort to improve overall health, I starting drinking all natural beverages. I discovered the Suja Life brand, they are certified organic by CCOF. The drinks are cold-pressed, organic, no growth hormones, all […]
This week I want to give a brief overview on Gluten Free Diet and Epstein Barr Virus. Both where the top searches in last weeks post. I hope the information is helpful. The CDC is a great place to get up to date information. Have a great weekend. 🙂 M Gluten Free What does it mean? My doctor follows The Mayo Clinic, Gluten-free diet: What’s allowed, what’s not. All information taken from The Mayo Clinic outline. A gluten-free diet is a diet that excludes the protein gluten. Gluten is found in grains such as wheat, barley, rye and triticale (a cross between wheat and rye). Gluten causes inflammation in the small intestines. Switching to a gluten-free diet is a big change at first, it takes some getting used to. Many specialty grocery stores sell gluten-free foods. We shop at Whole Foods and have found a large selection of gluten-free products, including brownies. Here are some surprises I discovered. My husband eats many gluten-free products but not exclusively. The Mayo Clinic strongly warns to watch for cross contamination. An example is if one is eating gluten-free bread and the other is not, the toaster could cause cross contamination. Another contamination point is using the same utensils to cook gluten-free and non gluten-free. Yes, it is that detailed. Be careful with grains such as oats which can get contaminated with wheat during the growing and processing. I treated myself to ham lunch meat and cheese last […]
This week fatigue had a hold on me. A task requiring little effort takes twice as long. The extra effort is difficult for my multi tasking mind. Waiting on test results added to the stress. The doctor is making me wait until Sept. 19th to discuss the results. He gave me a nugget yesterday. I have Lyme, the co-infection Epstein Barr Virus and low Folic Acid. Requiring 2 new RX’s, for a total of 39 pills per day and 3 shots per week. The doctor surprised me with the Folic Acid RX, the red blood cell count was low. My grandmother could put all meds and supplements in one hand, throw them in mouth and swallow at one time. I am the opposite, one pill at a time shoved to back of throat, taking meds is a task. I’m not my best while being in limbo. I can hear gramps telling me, if you learn to enjoy reading , it will teach you patience. Mostly true. If you have Lyme Disease a great book is The Lyme Disease Solution. My doctor uses as a reference guide. It’s spells out the two schools of thought on Lyme treatment. What a Lyme Literate doctor means and why it’s important to seek this type of doctor. The life cycle of Lyme and why it’s difficult to diagnosis. The different paths doctors may take to heal you, this is very detailed down to the names of […]
I haven’t gone off the deep edge or forgotten what day it is. This song is the most beautiful rock song about finding God. This is dedicated to my friend/followers. Thank you for the kind words of support, prayers and overall positive thoughts. It would not be right if I didn’t mention EC is the master guitar rocker. The Rock Star in my head plays like my guitar idol. Have a great weekend. 🙂 M
JOURNAL ENTRY THREE This week had its share of challenges. I completely rebelled, Lyme won the arm wrestle. Caution: For those who did not read last week. Lyme is prevalent in America, Canada, Germany and many other countries are seeing an increase. Lyme Disease can take one to three years out of your life. I know many of you don’t care […]
I have learned several lessons since the last journal entry. A word of caution. For those who enjoy the outdoors anywhere in the US, Canada, Germany and parts of England, please educate yourself on Lyme Disease. If detected early doctors can usually treat with a short round of antibiotics. It is hard to think a tick the size of a […]
Repost from 2014 So much time has passed since this first Lyme blog, I found it interesting and naive. I hope you enjoy reading. Maybe you’re at the beginning of your Lyme journey. I’m always here for you. M Scheduling probiotics, medicine, and supplements is a challenge. With probiotics you have to wait before eating or taking meds, then juggle of […]
This hurdle has been on my mind for days. I’m not afraid of needles, it’s the thought of drawing the med out of bottle then injecting into my stomach. I cleared the hurdle with room to spare. I was diagnosed with Lyme Disease last week, it’s been a whirlwind of new meds, supplements and schedules. I will […]
A couple of months ago I went to park and took photos of ducks, water and most important fresh air. It’s probably the day I was bit by a tick contracting Lyme. All the details for another post. It was wonderful just to drive my car, it’s three years old and has at best 1,000 miles. After being in the […]
Update on Lyme post. As you read about Lyme you will hear about co-infections. When a tick bites you every infection its carrying transfers to you. Another type of co-infection is from the virus moving thru your body. If the virus makes its way to your organs including the heart and brain. The menacing virus causes damage inside the body other than Lyme. The co-infections can get extremely painful. I hope you will seek out the more information to get the true horrifying story. Education may save your life or someone you love. Warrior Here are several great resources to learn in-depth information on Lyme and Tick Borne Illnesses. On YouTube: Interview with Daryl Hall of Hall and Oats Dr. Horowitz: Lyme Disease & Chronic Illnesses ( Dr. Horowitz is the foremost expert on Lyme, invented an exact test performed at IGenex ) Lyme Disease: History & Controversies included proper way to remove tick. Additional resources ***http://justinandchrista.ca This is your total education on Lyme, Husband films wifes struggle with Lyme over 5 years. THIS IS A MUST She screams in agony, it’s heartbreaking and may disturb small children. ILADS International Lyme and Associated Diseases Society The association provides training for doctors for Lyme certification, tons of stats and how to find a Lyme Literate Doctor. Dr. Horowitz’s latest book, Why Can’t I Get Better: Solving Lyme and Chronic Disease ( downloaded but haven’t started yet ) If you want every detail, this presentation is for […]
Over the past 6+ months my Neurologist has performed every test in her arsenal except a spinal. Every test she ran came back abnormal yet not able to pin down a diagnosis (see post Are Those My Brainwaves). She refered me to a Rheumatologist to start on the tread mill again. I started researching illnesses which included brain wave abnormalities to weed out my more common symptoms. There were the ones I expected, Lupus, Multiple Sclerosis or other autoimmune disorder. I didn’t think my answer would come from RA Doctor. More reasearch and what I found was alarming, not the illness alone, the politics and witch hunt taking place. The illness is Lyme or other tick borne illnesses. The CDC rates Texas as med-high concentration. The east coast is at epidemic levels with some articles stating we are facing epidemic levels across the country. I had a different idea for this post yet feel it’s critical to get this information out ASAP. When I learned of the divide in the medical community over Lyme, I shook my head. What is the controversy. The CDC establishes treatment standards for doctors. The standard Lyme test is based on 20-year-old information. What happens is you go to doctor for a Lyme test, it comes back negative. You then find out the test is 30% +/- correct. The CDC acknowledges the test has false positives yet the standard for testing hasn’t changed. With a lack of confidence in […]
I went to my General doctor for shoulder pain three months ago. He refered me to a Neurologist. After several test, I know both legs have nerve damage, I have abnormal brain waves in two areas with no seizures and I’m falling more. She did two test to measure my brain waves, one test lasted three days. My follow-up appointment next […]
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